My Whole Life Changed When I Became a Caregiver to My Fiancé's Mother at 32

"The logistical issues are nothing in comparison to the difficulty of seeing your parent, your hero, become an invalid."

By
Kim Hooper

Feb 25, 2016

On October 9, 2012, a month before my now-husband was planning to propose, his step father had a heart attack while driving on the 5 freeway in Orange County. He slammed into a tow truck and died instantly. He was on his way to pick up special prescriptions for his wife, the love of his life, my husband's mother. Sue.

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Nobody knew exactly what was wrong with Sue. She'd tested positive for Lyme's Disease. She'd been diagnosed with Parkinson's. Over time, we didn't really care what it was called. We cared what it was doing to her. And what it was doing was, in short, devastating.

She was only in her fifties. Her mind was still sharp (and sense of humor very in-tact), but her body was failing at an appallingly fast rate. She became skeletal because her hands proved unable to hold the utensils necessary to feed herself. She couldn't stand or walk without assistance. She became incontinent, something we realized only after visiting and noticing the faint smell of urine. Worst of all, we couldn't hear a word she said. It was like her vocal cords had gone limp. She was at the mercy of something that was siphoning all her strength while we watched in horror.

When Dennis died on that freeway, we were suddenly responsible for Sue's care. And we didn't know what the hell we were doing.

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"We" included my husband (Chris), me, Chris's younger brother, and Chris's younger sister and her husband—all of us in our twenties and thirties. When Dennis died on that freeway, we were suddenly responsible for Sue's care. And we didn't know what the hell we were doing.

You don't expect this when you're young, in the proverbial prime of your life. My parents were dealing with end-of-life issues with my grandmother, but they were retired and had so much more life experience to help with all the decisions to be made. We were still trying to figure out ourselves. Chris and I were planning a wedding and buying a house and renovating that house and adopting too many pets and working full-time jobs.

And, yet, there we were. Caregivers—Chris and his siblings on the frontlines, the spouses trying to support.

At first, it seemed like the solution was to hire a professional. Chris was on the phone with every caregiving agency within a 50-mile radius. We discovered really quickly that those agencies are expensive (though they only pay the caregivers 10 bucks an hour). There were sibling conference calls to figure out the costs. Then began the parade of caregivers who caused us to question our faith in humanity. Some didn't show up for their shifts. Some seemed high. At least one stole from Sue. There were good ones, but they were the exception. And they were temporary.

Then there were the doctor's appointments, the attempts to understand what had happened to this once-healthy person. The doctors all had different theories, different magic bullets. There were no answers. In place of answers, there were insurance forms. So many insurance forms. If you find yourself in this situation, your house will become overrun with Medicare paperwork. You will fax medical invoices like it's your full-time job. You will listen to hours of old music.

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But the logistical issues are nothing in comparison to the difficulty of seeing your parent, your hero, become an invalid. If you don't have your own children yet (we didn't), the concept of someone relying on you completely is foreign. The role reversal isn't comfortable. For anyone. Sue didn't want her kids to be caregivers any more than they wanted the role. She put up fights whenever she could, rejecting food we cooked because it was one thing she could control. But the facts were the facts: She couldn't change the TV channel, or clean out her own ears, or go to the bathroom or shower alone. She needed constant supervision. She broke her hip once trying to get out of bed on her own. We learned our lessons.

There were new challenges, new questions every week. Was she eating well enough? Were the caregivers turning her in bed enough? Would we have to sell the house? Chris and his siblings had to decide which battles to fight (with Sue, with the caregivers, with the insurance companies), and which to let go. Everyone had different opinions on what was best. As the spouse, on the sidelines, you don't share opinions unless asked. You don't want to intrude.

At the same time as all this, Chris's father, also in his fifties, was dying of ALS in Oakland. Chris's stepmom was taking care of him, and doing an amazing job, so our visits were less about caregiving and more about quality time. In those first visits after his diagnosis, he seemed to be his usual jovial self; he was just walking funny. Then he was in a wheelchair. Then he couldn't use his hands. Then he needed a voice amplifier for us to hear him. It all happened so fast. He passed away in August of 2013.

Sue fought months past the time doctors gave her. We lived in fear of the middle-of-the-night phone call and then it came. She passed away in September of 2014.

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I wish I could say Chris and I handled everything with perfect grace, but we didn't. It was hard on us. When you're the spouse, the situation affects you, but your feelings don't matter. There are bigger things at stake. You still have feelings, though. I didn't like spending weekends alone while Chris cared for his mom. I shut down my Facebook account because I didn't want to see the fun our peers were having. But, somehow, we survived. I can easily imagine how a couple could not, especially when financial pressures are great. I could so easily imagine it that I made it a central part of my novel, People Who Knew Me.

I set out to write a book about a woman who fakes her death on 9/11 and goes to California to start a new life. When I started writing, I didn't know what, exactly, she was escaping. Then I became all too familiar with the stresses of caregiving and I realized that was it. In the book, Emily and Drew are a young couple barely getting by in Brooklyn. Drew's mother is diagnosed with Parkinson's, which creates a tension that eventually unravels their marriage. It's fiction, yes, but the dramatized fears on the pages are rooted in some reality.

There were times when, like Emily, I wanted to escape. See, when you're young, you don't appreciate that life has phases. You are fixated on the present. You are selfish because you're supposed to be, because these are the years to focus on yourself. Unfortunately, this isn't conducive to caregiving. Caregiving demands perspective. And if you don't have it, you will by the end of the experience.

We survived by remembering that caring for people who cared for you is far more important than Facebook-worthy vacations. We survived by clinging fiercely to one important life raft of a thought: While caregiving in your twenties and thirties is hard, dying is your fifties is much, much harder.

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